No announcement yet.


  • Filter
  • Time
  • Show
Clear All
new posts

    Originally posted by richard View Post
    Hi Pattylou. Welcome to the group no one wanted to join. You can ask anything here, shout, scream, laugh, cry. We have all done it and you will be supported.

    When I was diagnosed my wife and I talked about it a lot but didn’t want to talk to anyone else about it for a long time.Your husband is not alone and it’s very hard to accept that all your dreams and plans may never come to fruition. The thoughts of how your family will cope when you have gone are frequently in MNDers minds. It’s a horrible illness which makes you a physical wreck but still mentally astute.

    Perhaps a simple question like When this lockdown is over where shall we go for a weekend? may start a discussion. The how will we get there, the practicalities etc.

    Your husband may feel he has let you down and he will be a burden etc. I am sure you have said repeatedly that you will be with your husband and support him throughout this horrible disease. I feel I am a burden on my wife but she assures me, rubbish!, she says to me that I am not.

    There are local MNDA members who will visit and there are group meetings. I never wanted to go to these and didn’t. However I joined about 6-8 months ago, we meet on Zoom and I thoroughly enjoy it. You can share issues and problems with fellow sufferers and its helpful.

    I wish you well. Take care.

    This made me shed a tear reading it Richard. It’s exactly how I feel. Mnd is so frustrating 🤬


      Hi Pattylou, welcome to the forum that nobody really wants to join but all who had the courage to were soon immersed in friendly helpful conversations. Ask whatever you want and say whatever you need, love Lynne
      ALS diagnosed November 2017, limb onset. For the 4 yrs previously I was losing my balance.

      I'm staying positive and taking each day as it comes.


        Thank you Richard